New - Olivia (Micro-Preemie)

allynwonderland

Hi ladies, I was pointed here by some moms on a preemie board on FaceBook. I've decided to move away from the FB world, so I thought I'd join you ladies.

 On May 5th I had Olivia at 27 weeks. She weighed 1 pound 9 ounces and was 13 inches long. She did very well the first 2 weeks and since we have been battling with the ventilator and CLD. It seems they both play off each other and do as much to hinder as they do to help. grr. 

Olivia is 38 days old, 2 pounds 11 ounces and is 15 inches long. 

 Any ladies in a similar situation...or who have been in one...that could offer some advice, I'd LOVE to hear it! The NICU sucks and it can definitely make you feel like this part will never end.

(P.S. If your story doesn't have the fairytale ending, I would still like to hear it. You have to take the good with the bad.) 

jcsntms06

First off Congratulations on the birth of your DD. Love the name Olivia. I'm sorry you had to join us, but the ladies on this board have wonderful advice. Please keep us posted on your little girl.

njdcgirl

Welcome to you and congratulations on your daughter. My son was born 23w5d just about a year ago. He was 1lb 7 oz and now weighs 20 pounds and is doing great! He was vented for over a month had had many of the typical micropreemie issues - BDP, CLD, PDA, ROP, possible NEC, three surgeries... you get the idea! Despite all that he came home on no oxygen after 147 days. The NICU is so hard and finding support is so critical - I'm glad you found us! Please feel free to vent, ask questions, what ever you need. There are several micropreemie moms on here now currently going through the NICU journey and many other "grads" who can also relate. I'll be thinking about OLivia and cheering her along!!

kck329

Congrats on your beautiful little girl!

I also have a 27 weeker and she has been home for almost a month now with no oxygen or monitors! The NICU is a scary scary place and it does seem like your time there will never end. I'm glad you found this board-it was great when we were in the hospital and still provides great support now that we are home. We'll be thinking about you and your little Olivia, hoping she grows strong fast!

Kate621

Congrats on the birth of your sweet girl! I'm the mom of a 25 weeker. He weighed 1lb 13oz and was 12 inches long. He had lots of respiratory issues, vented for 4 weeks, two surgeries, an aquired CMV infection, staph infection and spend 121 days in the NICU and came home without oxygen. He really struggled with weight gain but has done amazing since we have been home and is now up to 19lbs. The NICU is a nightmare. Please know that you can vent here anytime you need to. We've all been there. ((Hugs))

ETA-details

allynwonderland

WOW! 23w! And yet almost as big as Olivia haha Thank you very much for letting me know a little about your little boy - he is ADORABLE by the way! 

Congrats on making it home on no oxygen...I just watched a little girl go home yesterday on oxygen and an apnea monitor, and all it did was make me hope and pray that's not how we have to bring Olivia home. I've heard those apnea monitors are a nightmare!!! 

 

Natalie_may

Congrats on your little girl!  I have 27 weekers and after 95 days in the NICU, three surgeries, group b strep, meningitis, osteomyelitis, PDA, ASD, spontaneous bowel perforation, IVH, and increased signaling in the periventricular white matter they came home with no oxygen or monitors.

They are 2 months adjusted now and you would never know from looking at them that they were as early as they were.

Good luck and keep us posed! 

katie4253

I don't have experience with any of those issues, but I wanted to welcome you.  Your daughter is absolutely beautiful.

JoJoGee

Hi, and Welcome!  Your daughter is adorable.  It looks like she is waving to you.

As for our story, it is different than those here.  Not bad, but different.  Lilith was born at 26 w 2 d.  She was 1 lbs. 10 oz. and 13.5 inches long.  We did not have  many preemie issues (no PDA, no IVH, no NEC).  We did have mild ROP (but that has resolved), and breathing difficulties (as any 26 weeker would).  We thought we were a few of the lucky ones.  However, Lilith's breathing difficulties were a little bit more than the average preemie.  While Lilith's lungs were in fair condition, her airway was floppy and scarred from weeks on the ventilator and multiple extubations / intubations.  In all she spent 14 weeks on the ventilator before getting a Tracheotomy.  Then, once she got her Trach, Lilith's oral aversion (from being on the ventilator for so long) made it difficult for us to feed her, so she got a G-tube.  Lilith has been home for about a month now, 1 month past her EDD and after 125 days in the NICU.  She came home with a Trach, minimal Oxygen (1/8 of a Liter), a Pulse-Ox monitor and a G-tube.  She has reflux, a small ASD, and calcium build up in her kidneys.  She is on 3 medications.  Because of her special needs, we have nurses come to our house twice a day.  They each spend 8 hours.  The day nurse watches Lilith while I work, and the night nurse watches Lilith while H and I sleep.  We also recieve visits from the county board of MRDD once a week for EI (Early Intervention), and we must contract with a DME (Durable Medical Equipment) company to order Lilith's medical supplies every month.

The truth is, even with all the interventions our little one needs, we are the lucky ones.  Lilith is alive, and she is home with us.  Even better yet, she seems to be developing right on track with her adjusted age (see her playing with DH in my siggy).

I guess my point in posting this is that you should hope for the best.  But, if you find that your DD needs medical intervention to keep her here and safe, it is normally not as bad as it may seem originally.

I hope Olivia has a (relatively) short and uneventful NICU stay.  As I am sure you have already heard, it is a roller coaster ride.  T & P.

allynwonderland

Thank you for sharing. This is probably my biggest fear right now. We are trying very hard to ween her from the vent, but we are still sitting in the 55-70% o2 requirement range right now. She has been on the vent for almost 3 weeks now, which isn't long - but it is compared to the fact she wasn't on it for the first 2 weeks. I want to block out the possibility that she is going to need a trach, but it def is a reality I just am not ready to face yet. 

Chitown chic

Hi there! Olivia is adorable, and she is almost the exact same age as my DD, Michaela, who was born on May 3 at 27 weeks, 1 day. Michaela weighed 1lb, 6 oz at birth, and after almost six weeks, she's up to 2 lbs, 10 oz. While she hasn't had a ton of respiratory issues (was on CPAP for a few hours after birth and has been on a nasal cannula ever since -- she was weaned to 2.5L this week), she still has a fair amount of apnea episodes. She also has a PDA, and has had tummy troubles since birth, though we're hoping they are starting to get resolved. We had a NEC scare a little over a week ago, but it turned out the infection she had wasn't intestine-related, and seems to be resolving with a course of antibiotics, so the doctors restarted her feedings on Wednesday of this week. It has definitely been a roller coaster ride these past six weeks, and we're not even halfway through our NICU experience. You have found a great board though -- the ladies here are super supportive and seem to be the only ones that "get it!"

You are in my thoughts, and please keep us posted on Olivia's progress. Hopefully, both of our little girls will be home before we know it!

damabo80

Congrats on the birth of Olivia, and welcome to the board! She is so cute!

MrsLee22

Welcome to the board! Olivia is such a cutie!

My babies were born at 24w1d. Audrey was 1lb5oz and Grayson was 1lb8oz. They spent 7 and half weeks on the vents, and Grayson had to be re-vented for an extra week. They spent a week on CPAP each and then have been on a high-flow cannula since. They've been off for good for about a month now though and are doing awesome! 

It will feel sometimes like she will never ever be able to breathe on her own but she WILL get there, I promise! I hate to say it because I HATE to hear it, but it really does just take time. They have to grow stronger and develop new lung tissue and it just takes time. The NICU has been the BIGGEST lesson in patience that I have EVER had.

bkjcwedding

Congrats on precious little Olivia and welcome!

Mefunkho

Congrats on your little girl. She is beautiful. My DD was born 11 weeks ago at 23w3d weighing in at a whooping 1lb 1oz and 11 inches long. She had an infection and has struggled with her breathing the whole time. Right now she has mild ROP that is being carefully monitored. She was intubated for 6 weeks, on SiPAP/CPAP for 4 weeks and is now on a nasal cannula. Her weight is up to 4lbs 6oz and she is 16 inches long. We are still waiting to really progress so we can take our sweet little girl home. We get to start oral feedings this week and from there is is continued weight gain and mature eyes or being off oxygen to come home.

I know how you feel and understand what you are going through. The NICU is a tough place. Take everything one day at a time and remember it's a marathon not a sprint. You will get home eventually.

Please feel free to vent or ask questions or post updates. We love to hear how everyone's babes are doing!

I will be keeping you and Olivia in my T&Ps!

Denesdia

Welcome to the board, mama!  I had my DD at 25w2d and she spent 96 days in  the NICU.  We dealt with the preemie checklist (PDA, PVA, ROP scare, NEC with bowel resection, and lot of respiratory and weight gain issues).  She is 2 1/2, now, and other than being small you would never know the hell the beginning of her life was for our family.  Please check in with us often, ask lots of questions, and use us to vent and to celebrate.  We know what you are going through. 

livnluv2010

Congrats on the birth of your adorable little girl! 

Million$$Baby

Welcome to the board, and congratulations on your daughter!

My babies were born at 25w5d and were all about the size of Olivia. Every single day of their NICU stay is documented on my blog if you ever feel like reading it. https://www.threecheersforbabies.blogspot.com/  We went through some very rough times, but I now have two happy, healthy toddlers to show for it.

Good luck in your joureny and I hope to see more of you here!

t1nkfan

Our 28 weeker was born on April 26.  It's a long, emotional haul so far...  we're in the same situation only about 2 weeks apart   Sorry you had to join the board, but you'll find a lot of good support here!